Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from each other. It doesn’t matter that we’ve never met because, along the way, it began to feel like we know each other. Still, no matter how our group has grown these past years, there will always be one more diagnosis, and one more family learning someone they love has superficial siderosis. Read More... "One More Family"
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A patient-powered registry (PPR) or patient-powered research network (PPRN) empowers individuals to contribute to translational science in meaningful ways. Read More... "The Superficial Siderosis Patient Registry"
Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks… Read More... "Introducing Mass General Research Institute"
Research takes a very long time, so as hard as it may be to face, even though some of our community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real chance to live a better life. Read More... "The Tissue Donation Project"
Does Deferiprone provide a clinical benefit to the superficial siderosis patient? If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of the… Read More... "The Deferiprone Trial Results Are In"